I Got Botox

I’ve had crow’s feet for a while. Not sure when they developed (is that the right word?) but they’ve been a presence for some time. I turned that age this year, I continue to deal with my disease and I felt the need to…HAH! I JEST…I can’t even go on. I do have crow’s feet but I actually love them; I feel like they enhance my smile. Anyhoo, the point of this post.

As you know, my left side, the more affected side – both upper and lower extremities get stiff. The medical term for what I deal with is Spasticity. In quite basic terms, Spasticity is an increased rigidity of muscles due to brain or spinal cord injury. It is a condition in which muscles stiffen or tighten, preventing normal fluid movement. The muscles remain contracted and resist being stretched, thus affecting movement, speech and gait. A number of muscles in my left hand, arm and leg are in a state of constant contraction hence the constant curl of the hand, bend in the arm and stiffness in the leg. A number of MS patients are afflicted by Spasticity and (my opinion is) that’s one of the reasons that our movements tend to look the same. Over time, I have observed that our movements are so similar and I’ve actually guessed an MS diagnosis correctly once or twice. Years ago, I was prescribed muscle relaxants to help. I was on one, then two, then one (again) medication with varying dosages. Then I started using CBD oil and I was able to decrease from 20mgs 4X daily to 20mgs daily. That is my current dosage and I guess it works for me, although the muscles are still tight and they continue to contract. If you see any pictures of me, you’ll see that left arm is always bent and the hand looks like I’m ready to coff down somebody. Luckily for me, the spastic limbs are not painful and trust me, that fact is not lost on me, so I don’t have to deal with pain on top of everything else.

As it turns out, Spasticity is also treated with Botox. Botox is used to kill the nerves of the rigid muscles, thus stopping them from being in a state of constant contraction. During one of our sessions last year, my Occupational Therapist brought it up and asked her manager to give her opinion and she thought that I was a good candidate for that treatment. I was officially evaluated for it in August this year. Of course, it wasn’t as simple as “you are good for Botox” and “your appointment is…”. We had to get approval from my insurance company and the wait for an appointment was long. Anyway, I went in for my first round of Botox injections with Gilbert on November 16.

I used to think that insurance was a big rip off, especially when I didn’t understand the ins and outs/terms/how it works etc. Years ago, as a healthy person, I used to get angry when they sent my Explanation of Benefits statements and I saw how much they didn’t pay and how much I had to come out of pocket. Over the years, I’ve come to completely understand the lingo, inner workings and I’ve also come to realise that I’m very lucky because my insurance is quite good – I also “stick with the devil I know” because I’ve been with the same company since my diagnosis and boy am I glad, that as a sick person, I have it! Anyway, so I’ve been approved for one session of Botox every three months for a year. That first session included 15 shots into multiple areas of my arm, ranging from my biceps to muscles just above my wrist on my inner forearm. I was a little nervous/scared; it does involve a needle and I had no idea how it would feel altho I’ve seen videos of people sitting quite still like nothing is happening (side note: people look the same way when they get tattoos and I howled, cussed and squirmed the entire time mine was being drawn). It was fine though, once or twice I felt a slight pinch but nothing to write home about. Good news is that it didn’t affect my ability to do anything by the time I got home and it was a normal day.

The thought process is that those overworked muscles are deadened so the patient can work on strengthening the opposing muscles in order to regain some normalcy. So now back to therapy I go. Gilbert wanted me to wait at least 2 weeks before I started so I had my evaluation appointment last week. As far as the reaction to the Botox itself so far? I wasn’t sure if it were mind over matter, my feeling as if my hand is less tense especially when I’m relaxed and doing nothing these days. It was promising that Chrstine, my OT found that there is less tone in that hand during her evaluation. Same with the arm, it’s easier for me to stretch it out without using the other one to assist or propelling my body forward to compensate for the lack of arm reach. There’s still work to do, they both still curl and bend, but they are certainly not as rigid. We will work on continued strengthening over the next few months. My next Botox session is in February, and at that time, based on my feedback, progress shown etc, Gilbert can choose to alter the amount of Botox or the number of shots. Like everything else with this MS, it’s always a trial-and-error process until we find what works.

There you have it. My Botox story – not for my wrinkles but for my wretched disease!

Stax

P.S. Insurance paid 100% which actually quite surprised me but hey! I’ll take the wins when I can.

Thank Goodness

I am tired of napping!  i mentioned before that I’m on 2 sets of muscle relaxants for Spasticity.  they both cause drowsiness so about an hour after taking them the drowsiness knocks me for 6 and sometimes it’s completely embarrassing.  last week, I went to the dentist and actually was falling asleep in the dentist’s chair! – i just couldn’t help myself!!  WTF???

Now i didn’t start taking them at the same time, so I know that my body is used to the 1st one (that caused me to be sleepy at first and then soon after there was no effect) – it was when i started the 2nd one that i just started getting so sleepy that i couldn’t help but go to sleep even if for a short time (once it was during the week at work, i put my alarm to go off in 7 mins and i swear that it was the best 7 mins of my life, i woke up COMPLETELY refreshed) – but alas i can’t afford to that everyday.

This looks just like me when i took that 7 min. nap

I called my doctor’s office yesterday and told them that something had to give because the drowsiness is not going away.   I was so happy when the nurse called back and told me that i can cut out the dose that i take during the day, but i should keep taking it at nite.  I have no problem with that because nite time is time to sleep anyway – unless i have to be out, then i’ll have to deal somehow.

I cut out the dose this morning and no glazed over eyes, no sleeping, no napping – NOTHING!!  Hopefully, the dosage of that medication was so small (2mg 3x daily) that it won’t make too much of a difference my NOT taking it as often.

Well…

My doctor’s visit didn’t really go according to MY plan.  It’s not bad news, but i havent gotten a prescription for the new drug.  UGH!!!

I have to be approved by the insurance company BEFORE i can get the drug.  I have started the process…the forms have been signed, but it will be a few weeks before I am approved (by every Tom, Dick & Harry); who knows when i’ll actually HAVE the drug in hand….again, oh well, not much i can do about this.  At least the process has started.  He also told me about an alternative to the Ampyra (in the event that i am NOT approved or the cost is astronomical) that will be cheaper and i won’t actually have to go thru any kinda approval process.  Maybe more to come on that…

I have to admit, i never went to see him regarding my walking issues.  I didn’t think that it was a sypmtom per se, just the disease progressing along it’s awful course.  Well he got to see me first hand yesterday and is concerned that i may be relapsing!  Oh Lord…really?  As a result, he has sent me for a brain/spine and thoracic MRI; a brain MRI is long and torturous enuf, I wonder what all of them put together must be like.  Not looking forward to it really…but again, what can i really do?  The other thing he informed me is that i am suffering from Spasticity.  I’ve heard of/read up on Spasticity before, but i thought that it manifested itself as jerky movements accompanied by pain…didn’t realize that the stiffness/weakness that i suffer from is also part of it.  To help with that, he has given me some muscle relaxants.  He also mentioned my going on steroids to help with it, but i told him that i’d rather NOT do that, so will try the drugs (i have no problem taking drugs) combined with PT and hopefully, things will get better. 

  • Where the hell did I pick up this disease? 
  • How am i the “lucky one” to “pick up” this disease?
  • Why me?

Soooo many questions that i have no answers to…it is what it is, i guess.  I didn’t ask for it and can’t return it so i just have to deal with it!

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